Hi Everyone. I hadn't posted because I got my phone shut off. Then, I come back and everything has changed!! Wow! it is a little hard to get used to, but it is real nice. Anyways, Cristian has stopped walking. He doesn't even try to walk. He just lays there when he gets home from school. He sits in a wheelchair all day. He is going to get therapy on his legs once a week, which he was getting once every 2 months. Is this the beginning of the third stages of his illness? Isn't it too soon? I expected this to happen a little more down the road. Am I to naieve (spelling)? I am so confused and Cristian looks at me like he's given up. I can't stand to see this. These last three days have been so hard and I don't know how to handle it. I went today to look at strollers and wheelchairs. It was so hard and I couldn't believe I was looking for these things. I can't except this. I am so sad right now. Dr. recommends more therapy at a clinic besides what he is getting at school. He told me not to rely on the school. I am so sad, please someone help me. What do I do? I have to carry him everywhere, to his room, to the kitchen, the bathroom to change his diaper, to the bus. He isn't even trying anymore. He looks so depressed. Three days ago he was jumping on the trampolene!! What happen to my baby??

Nilda

Sheila George

February 25th, 2004, 06:29 PM

Nilda,

This can be part of the syndrome, but it can be something else, too. The first time Shelby experienced it she also limped some when she tried to walk so we got x-rays to make sure her legs and hips were okay. Sanfilippo kids do not have a lot of orthopedic problems but they can have hip problems. She is still having trouble but it is getting better. We still periodically get her hips x-rayed to make sure that is not the problem. Another issue Dr. Muenzer told us to have checked were her ears anytime it seems like her balance is off. He said that fluid or her eardrum not moving properly could cause her balance problems, too. One thing I can tell you is each time Shelby has had a spell of some kind of deterioation, she comes out of it. For example a couple of times last year she could not walk at all but both times she came out of it. Like I said she still has problems walking but she can still get around.

We got a stroller for Shelby many years ago to help contain her because she would run away from me, so now that we are getting her a wheelchair I think it will be easier because I am used to using something like that for her. You might want to start with a stroller first. It might make the transition easier, although I know it can be expensive if you end up having to get a wheelchair anytime soon.

Hang in there, the ups and downs are tough, but we are here for you.

ChrisMPS2

February 25th, 2004, 09:34 PM

I do hope it is something simple causing Cris to lose mobility. We have had problems with ear infections, stress fractures, and plantar warts. If it is time for a yearly round of visits with the specialists, then maybe they can shed some light from the thorough exams.

We had to minimize how many times we move William around the house. We have a pad, pillows, cushy blankets, and rugs in the kitchen/dining area for William to lay on and a TV for him to watch. In fact we all hang out there with him instead of using the living room we have made it so comfortable. Instead of a dining room table, we have two of the big mission chairs to sit in and hold him, his new feeding chair, and his old high chair which he still likes to eat in. We change his diaper right there. If we have company we just let them know we need some privacy. Lou and I have had strained backs a few times and then it is pure torture to do the lifting. Fortunately we both always heal up after a few days so far. William weighs 65 pounds.

If Cris is laying on his back more you may find his diapers leak as gravity somehow plays tricks with the regular diapers. The medical supply company that sends our diapers gave us diapers to try with wings which means there is more absorbant material at the upper sides. They are great and have really reduced the amount of laundry caused by leaks!

The flu is going around here with sore throat and stomach ache. Perhaps he is just not feeling well and can't tell you. Best Wishes.

Chris

mom2cris

February 25th, 2004, 10:25 PM

Well I spoke to Cristians doctor and he is scheduling an MRI and CAT scan just to make sure he isn't having problems with his spine or maybe has some type of hydrocephalus. That will be scheduled in the next few days. I hope everything is o.k.
My sister in law came to see Cristian and did some therapy on his legs and he got up and started playing with her and started walking around, but we had to stay close by to catch him when he would lose his balance. He tried to run, but just could'nt do it. After the masage he looked so relaxed and was smiling and it was the old Cristian. I was so happy. I am getting him the stroller first because it would be easier for me to carry and take with me in the car. My family and friends are all talking about doing a fund raiser for Cristian to raise enough money for this stroller. Everyone here is going to help and they know what we have been going through. Medicaid won't cover the stroller. So we are just going to raise the money ourselves with bingos, and bakesales, stuff like that. One way or the other he will get what he needs. Thanks you guys, it was just a hard day today after seeing all those different types of wheelchairs. It just made everything feel so real. I must have been in denial or something. Feels good just coming here and talking to people who know what I am going through instead of those who just feel sorry for you. It just hurts alot sometimes :cry: !!!!

Nilda and Cristian

Sheila George

February 25th, 2004, 10:36 PM

Nilda,

If the massage and stretching helped what Cristian may need is daily stretching exercises and possibly braces. We waited too long to brace Shelby and so we are going to have to go through a lengthy process before we can brace her. You may want to see a Physical Medicine doctor or an Orthopedic doctor. Or see if your doctor will order some physical therapy for Cristian. When we took Shelby for the PT the therapist taught us how to do the stretches at home.

momtoty

February 26th, 2004, 01:08 AM

Nilda,
If there is a chance Christian has hydrocephalus, don't delay on the MRI. stay on the doctors and get it done. And hydrocephalus can cause balance issues, unsteadiness, lethargy, or even the opposite- hyperactivity (in MPS children). If the MRI shows any extra fluid on the brain (or CSF collections) do not let them tell you Christian has "benign external hydrocephalus" or "benign external extra-axial CSF collections" get a second opinion, It appears that sometimes the ct scan or mri's of children with MPS do not always show the full picture- Ty's pressure was far worse than the doctors imagined by looking at his mri, infact, they were shocked he had such a high opening pressure on his lumbar puncture because his mri and scans did not show it. There is a wonderful pediatric neurosurgeon in Dallas, who took care of Ty. If you find out you have any need for that, please let me know and I will email you all the info on this doctor- he is worth the drive, we drive 4 hours each way just to see him.

Laura Brodie

February 26th, 2004, 04:01 PM

Nilda , The same thing happened with Will when he was only just 3 . He just stopped walking-talking moving around and did not eat well at all. The MPS docs tested for communicating Hydrocephalist on a MRI straight away but it was not this - it turned out in the end to be a virus plus bad chest and ear infection- He is lively and moving again but never recovered his speech back :( I do know so how you feel and hope you get some answers and treatment soon
Love Laura

Sharon Cochenour

February 26th, 2004, 05:28 PM

Nilda, When I first read your post it made me think of communicating hydrocephalus because it was a drastic change from his usual behavior.
I did get a stroller for my son because last summer he would not walk, he is to heavy to carry. I could not afford one and my insurance wouldn't cover the cost. People from my work had a raffle and bake sale to help pay for it. They made enough to pay for the stroller and a hand held portable nebulizer. Now Andrew walks more and I leave the stroller in the trunk for when I need it.

We also do therapy to his legs daily to help keep him going. Hope you find out what is going on soon.
Sharon

mom2cris

February 27th, 2004, 10:56 AM

Hi everyone, I'm just waiting for the doctor to call with the appointment for the MRI and CT scan, and for a consultation with the anesthesiologist. They want to consult, just to let me the complications for the anesthesia. They want to figure out which is the best for him because he will not go through that test without moving!! Right now, he tries to get up and go, but just doesn't have enough energy. And when he finally gets warmed up he just loses his balance. At school he just sits in the wheelchair. It is so calm right now at home that I feel guilty, because I wanted him to calm down, because he was always running around and I just was so burned out. Now, he is calm and I want him back the way he was. Does that sound weird??
We put him in the trampolene yesterday because he crawled to the door and just sat there and kept looking at me like trying to tell me he wanted to go outside, so I carried him there and threw him in and he was laughing and jumping and it was the normal cris again. When he came inside he was walking around, only to lose his balance and fall down. He kept trying though. This morning he didn't want to walk at all. I had to carry him to the bus and let me tell you he weighs 58 lbs. My back hurts really bad, but I have to do it. We made him a sidewalk from my front door to the street where the bus comes so that it would be easier for him to walk in the mornings. We had just finished it on the weekend and then he stopped walking. It still is going to help when we get his stroller. Well I am going to wait for the Dr to call so let you all know what happens. Thanks everyone for all your help and support. I really needed it these last few days. :?

Nilda and Cristian

Jessica

February 27th, 2004, 11:25 AM

Kaity acted the same way when she suffered hydrocephalus and needed a shunt. :cry:

I hope all goes well with the MRI and you get all your answers quickly. Please keep us updated.

mom2cris

February 27th, 2004, 09:32 PM

Dr. says that we should stop the seroquel for the weekend to see how Cristian does without it. He is scheduling the MRI and CT scan for next week hopefully by Monday!! He is doing so much better, still having trouble with his legs, but he's still getting around. I will get answers soon, it's just waiting is the worst!! I'm very impatient when it comes to things like this.

Nilda and Cristian

Raines Family

March 2nd, 2004, 02:08 PM

My daughter needed a stroller a long time ago because she also wouldn't stay by me and would fall to the floor when I needed her to walk with me. I ordered one from Samans Prestion called the Pixi and it works really well but they have others. I think you need to get notes from all doctors and push for the strollers through Medicaid. I had a friend do this and she won! Like me when it comes to Caylin I put up a fight because they need these things. Don't stop fighting because thats what they want you to do.